A Journey of Living with Cerebral Palsy

Acceptance

As much as I put on a “brave face” and strive to have a positive attitude on days when my CP has me doubled over in pain, there is a lot of internal frustration that comes with living with a disability. Typically, my blog has been a place to vent those frustrations. But I’d be wrong if those difficult days were the only memorable ones. Does my disability frustrate me? Absolutely. Are there days where I wish I wasn’t in constant pain? You bet. But at the end of the day, I wouldn’t trade my disability for anything. I really wouldn’t. It’s given me a perspective on life and allowed me to cross paths with some of the most special people I’ve ever known, and without my disability, I don’t know if my life would have unfolded in the same way. A blessing in disguise, I guess.

Typically, “good” days aren’t memorable. They are simply a small break, even if only for a few minutes, of the physical and emotional pain I feel as a result of being a member of the largest minority in the world. However, a few weeks ago, I had a “good day,” in a sense, and it’s one I’ll never forget.

I was going to Subway to get lunch and looking forward to having an entire hour to myself (yay introversion!). I took my walker inside, as it is my preferred method of mobility these days when I’m by myself because it prevents falls. However, when I got to the door, I realized my conundrum. I couldn’t get the door open and maintain my balance at the same time. However, thankfully, as I was attempting to open the door, someone inside saw my struggle and came to assist (thank you, kind human). I said thank you profusely, and when the gentleman just smiled broadly and nodded, I realized just how much people long to help others. Typically, it’s difficult for me to accept help as I feel like a burden, but I have to realize that typically people don’t offer to help unless they are genuine and truly do want to assist you in some way. That realization really came to fruition once I was done with my lunch, but I’m getting ahead of myself.

I stood in line to put in my lunch order, which for the first time wasn’t a big deal because my walker has an attached seat so I can sit whenever I need (best invention ever!). Anyway, I enjoyed my solo lunch, counting myself lucky to have received so much positive support from others during this difficult transition regarding my mobility. I then got up to leave, pondering in my head how I was going to exit Subway without possibly falling over or calling even more attention to myself. It was in this moment that I knew the best course of action was asking for help, so when I eyed a group of EMTs eating lunch, I asked for assistance. One guy was so excited to help he practically bounced out of his seat mid-bite to assist me, replying “Of course!” with the most genuine smile I’ve ever seen. I thought I was going to fall over (ha!) from happiness.

I thanked him over and over for his generosity, happy to know there were still kind people in the world, but that wasn’t even the best part. A few minutes later, I got to my car, opened the truck, and went to place my walker in the back like I’ve done hundreds of times without incident. However, this time I lost my balance, and because my hand was still on my walker as I was falling, my walker fell on top of me. Don’t worry, I’m fine. But it sucked. I felt embarrassed (as usual) and just aggravated at my body for not cooperating.

After a sigh of relief and a reminder to myself that the choice is to either remain on the ground or get back up, I rose to my feet. Once I was standing and started to close the truck of my car, I looked up to see the EMT from before sprinting out of the Subway. In my head, it felt like watching Baywatch, standing in awe as an attractive, shirtless man ran towards you to save the day (but he was only shirtless in my head, haha). He came up to me and said, “From the way you got up, I can tell this happens often, but is there anything I could do to help?” As much as I wanted to say no, the kindness in his eyes made me want to hug him. I didn’t hug him (which was the wrong choice because he was attractive, muscular, and looked like he could throw me over his shoulder with just a finger). However, I did take him up on his offer to help. I said, “You know what would be really great? If you could walk me to the front door of my car and help me get in safely.” The “of course” couldn’t come out of his mouth fast enough. Once seated safely, I looked up at him and said “To be totally honest, it is really hard for me to ask for help, but I’m so glad I did today.” He nodded, double-checked to make sure I was okay, and softly closed my car door.

I waited until he was back inside to cry the happy tears I couldn’t hold back anymore.

In the world of disability, there is a term known as “acceptance,” as in….acceptance of your disability and all that it means for you. I’m going to be honest. I’m 25, and I’ve had Cerebral Palsy since birth, but there are still plenty of days where I get just plain frustrated with my CP. Typically, most of my frustrations are aimed at the outside world and the lack of understanding of disabilities (physical and mental) in general. Yes, there are a lot of positive changes for the disability community, like the Americans with Disabilities Act and the Individuals with Disabilities Education Act. However, there is much more work to be done, and we can’t stop here. No matter how positive your outlook, 100% overcoming societal stigma experienced by being a member of the largest minority in the world is close to impossible (at least in my opinion), and for me, that is the hardest thing about being disabled. Living my day-to-day life with CP is a walk in the park compared to societal stigmas and societal responses to having a disability. I don’t know how many times I’ve gotten pissed because someone has parked in a handicapped spot without a handicapped placard or someone has parked in the access lane next to a handicapped spot and/or parked in front of an access ramp because they are “just waiting on someone and they’ll only be a few minutes.” Because, news flash, those spots and accommodations are there for those that need them. Just be respectful and realize that.

It’s safe to say I haven’t reached the point where I’ve fully accepted my disability. However, I’m doing much, much better with it now than even just a few years ago. I’ve gotten more comfortable expressing my needs and asking for help when I need it. I’ve started to better understand the reality of getting older with my disability as opposed to still thinking I can do the things I did even 5 years ago. I’ve settled in, in a sense. For some, that may look like giving up. But trust me, I’m far from it. I’m way too much of a fighter to stop trying to have the most fulfilling life possible. Trust me, those who know me know that “giving up” does not even exist in my vocabulary. Yes, being disabled is just a piece of who I am, but from my standpoint, it’s a pretty big piece simply due to how much it impacts me on a daily basis.

Best of all, I’ve reached a point where I actually want to utilize my experiences of living with CP to connect with and help others. That used to not be the case. I used to want to get as far away from my disability as I could. Simply put, I was in denial, and I was in a space where I just felt like I couldn’t process all the emotions that come with living with a disability. Day by day, I’m processing through those emotions. And best of all, processing all those feelings is best done for me through writing. I have a feeling that’s partly because not only do I love to write, but I am hopeful that my words will connect with someone else, even if only in a small way.

So, have I fully accepted my disability? Likely not. And why do you ask? Because there is always, always more work to be done on ourselves and more thoughts, emotions, and situations to sift through. I’m content with that, though. As long as I’m processing through things and changing, I’m growing and ultimately becoming the person I’m meant to be. And for me, there’s nothing better.

As I was entering my teenage years, my parents and I were unsure whether I’d be able to drive a car. However, as with most things in my life, I knew I wanted to drive a car, and I was going to do anything I possibly could to make that happen.

While I didn’t drive a car until I obtained my permit, I was driving as early as 5 years old. I used to drive my Barbie Jeep around and around my neighborhood for hours on end. I’d turn on the little Barbie radio in the Jeep and “floor it,” flying down the sidewalk in my hot pink Barbie Jeep. As I got older, my Barbie Jeep transitioned to a go-cart and eventually a four-wheeler, but the go-carts we had were always my favorite. I know I likely drove way too fast, but I remember my neighborhood used to say that they always knew when I had my go-cart out because they’d hear my laughter and screams all the way down the block. Therefore, when I eventually got behind the wheel of a car, I had years of driving practice already. It’d be a piece of cake, right? Not quite.

I have spastic diplegia cerebral palsy, meaning my CP primarily impacts my legs and causes them to be incredibly stiff. Due to the stiffness of my legs and because I knew that my legs had a tendency to involuntarily shake if my foot was placed in a particular position (called clonus), I was pretty nervous about learning to drive a car. I didn’t know if I’d be able to move my foot from the gas to the brake quickly or easily enough. I also didn’t know whether my legs would become tired quicker due to having to be flexed when using the gas pedal and brake pedal. I had been told by my physical therapist at the time that there was always the option to utilize hand controls to control the gas and the brake as opposed to using my legs. However, I also knew that I wanted to do my best to drive just like everyone else.

A benefit I had when learning to drive was the fact that I lived in a small town. Because of that, I practiced driving on dirt roads, empty back roads that hardly had any traffic, and through town where the speed limit was only 25 miles per hour. Typical kids learning to drive might have been frustrated by this, but I was not. I wanted to become as comfortable driving on country back roads as I could. In order to test my response time, we’d be driving around and my mom would say “deer” (proof that we lived in the south), and I’d pretend I saw a deer in order to practice slamming on the brakes. We learned pretty quickly that I had no problem moving my right foot back and forth between the brake and the gas (which was a major relief on my part because I didn’t want to have to utilize hand controls).

The most important thing for me when learning to drive was taking it slow. Initially, due to my own fears, I drove really, really, really slow, but that changed as I became more comfortable. Once I got my permit, took driver’s ed, and accrued a certain number of driving hours, I was ready to take the driving aspect of the test to obtain my license. And despite all the practice I had, I was completely terrified.

When I took the driving test with a woman from the DMV in the passenger’s seat, initially everything was fine. However, within a few minutes my legs started shaking so badly that it was difficult to keep my foot steadily on the gas. The DMV woman noticed the shaking and said, “Why are you shaking like that?” I responded, “I shake when I’m nervous,” not wanting to bring up my disability for fear of her using that against me when determining if I passed or failed the test. Upon hearing my response, she asked me to pull over so I could “compose myself,” though I knew that no amount of sitting still would prevent my legs from shaking. Eventually, the shaking lessened to the point where I got back on the road and completed the test. Once we returned to the DMV, the woman’s response wasn’t what I was expecting. She said, “You almost didn’t pass,” as opposed to, “Congratulations.” Looking back on it now, I still feel like she was just overall skeptical about my ability to drive a car.

Because of my disability, learning to drive wasn’t just about getting my license and having a car to drive. It was so much more than that. It meant independence. It meant feeling included as a functional member of society. But more than anything, it opened so many doors in my future. There have been a few instances where people have been surprised to learn I am able to drive on my own, and I know in the disability world it is no easy feat. But I also know that if I had been unable to drive, I would have found some other way to take on an active role in my world. After all, my life has always been one of adaptation, but it has never been one of defeat.

I saw you in the Tupperware aisle and couldn’t stop smiling at your daughter sitting in the shopping cart. Her hair was pulled back into braids, and I smiled as her braids twirled from side to side as she looked around, taking in the wonder of the world around her. You were looking at lunch boxes, likely planning out your meals for the week and hoping your child did not place another Frozen-themed item into your cart. But your daughter kept sneaking glances at me, and I smiled at her, taking note of the curiosity in her eyes.

Your daughter kept looking at me, and I remained patient, waiting for her question. She began to speak, but I didn’t hear what she said.

“What?” I asked her.

“Nothing,” you said, hushing her.

As you hurriedly walked away, your daughter’s eyes drifted back my direction, but I didn’t call after you…even though I wanted to. I didn’t have the chance to tell you that this kind of situation has happened more times than I can count, and that I am not embarrassed or hurt.

Instead, I wish you would have allowed your daughter to ask me about my disability. I wish you would have thought about the importance of teaching your child that differences are okay, and that just because I have a disability doesn’t mean she should be afraid to approach me and talk to me. What most people don’t realize is that I love to talk about my Cerebral Palsy. I love to answer questions to allow children and adults to better understand what my life is like. I love to have the opportunity to explain my perspective on the world.

I am not the first person your daughter will meet who is different. Though you may have felt uncomfortable because your daughter tried to initiate a conversation with me, don’t be. You are her role model. If you feel uncomfortable around me or instinctively want to walk the other direction, so will she. And don’t be worried about saying the wrong thing or that she might. The only wrong thing is not saying anything at all.

Allow your daughter to talk with me and ask me anything under the sun. Allow her to learn that differences are unique and something to be proud of. Give her this moment, even though you may have so many other things on your mind. I’ll be glad to talk with her for as long as she wants. I’ll tell her that this was the way that I was born, but that I would not change it for anything. I’ll tell her that I do things differently, but that’s okay. I’ll tell her normal is just a setting on a washing machine.

Allow her curiosity to bloom and her questions to flow freely, because guess what? She’s learning the most important lesson of all: inclusion.

Search for:

Follow This Blog Via Email

Enter your email address to follow this blog and receive notifications of new posts by email.